TEXT AMYZ77 £10 ( or whatever you wish to donate) to 70070 or click on DONATE button to the right......

My university friends Sarah and Richard had a little girl Amy, who was born with an as-yet-unnamed and little understood profound illness which meant she never learned to smile, to swallow, walk or talk and had limited motor  control so her movements were restricted. Watching  and hearing about your friends struggle to comprehend what was happening, taking on full time carer roles, and wading through endless tests that never gave them any real clarity on what was wrong was heartbreaking. Normally we avoid labelling children, but trouble is, they never got a diagnosis, and  the uncertainty of not knowing what they were facing, nor how to tackle it was deeply painful and shocking. We like to think medical advances mean that most illnesses get a label, but this one didn't.  

Ive never been to a child's funeral before, and that day is pretty seared into my psyche; i can't think of it without sobbing. They called Amy 'Boo' and seeing 'Boo' written on the coffin with  orange daisies will stay with me forever. Sarah and Richard managed the funeral with such dignity; to this day i don't know how they did it. Whilst from the outside i felt that Amy's time here was done,  i'm sorry to say I so desperately wanted my friends to have  more joy and happiness, and frankly have a break and recover . 

That's not to say that Amy made them unhappy, she didn't, i recall their delight when it became clear that Amy could recognise words such as 'Froggy' and 'Ducky' at bath time. She couldn't reach out to touch them or turn her head as she had limited motor control, but she looked with her eyes. Sarah and Richard did find joy in these things,  but they missed out on many joys such as first smile, first words, first steps which most parents take for granted as normal development.  As a friend with a young child at the time, there was always discomfort sharing delights about my young son's antics, along with the guilt of knowing that my friends were not going to experience these developmental milestones and pleasures in the same way with their little Amy Boo.

They poured love, care, time and energy and endless patience into Amy, and so did Acorns Childrens Hospice, both into Amy and her parents.  From physio to respite care, i gather that Acorns were and are angels.  So that is why a bunch of us are canoeing  100miles of the river Wye for 5 days!! I suspect i may physically regret volunteering as the last time i canoed for a few hours i was stiff for days! But it will be nothing compared to what they went through. So please sponsor me.

www.shoneywind.com are paying expenses for this trip. Its not tax deductible against profits but is a worthy cause. So i thank Shoney wind for a) allowing me the time off for the canoe b) paying expenses

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